- Pulmonary hypertension (PH) is a simplified name for
a complex health problem- continuous high blood pressure
in the pulmonary artery in the lungs, resulting in an
enlarged heart which can also lose its ability to pump.
- It is a disease that affects people of all ages and
ethnic backgrounds although some people are more prone
to developing PH.
- PH is broken down into two main categories:
- PH which occurs as a separate entity, either sporadically
or due to genetic inheritance.
- PH which occurs as part of other illnesses including
scleroderma, sickle cell anemia, lupus, chronic liver
disease, and HIV – or use of diet drugs such
as Fen-phen.
- PH is often not recognized until the disease is quite
advanced.
- PH is often not diagnosed in a timely manner because
its early symptoms can often be attributed to those of
many other conditions. Some of the symptoms of PH include:
- Chest pain
- Breathlessness
- Low energy
- Dizziness and fainting
- Swollen ankles and legs
- Bluish lips and skin
These symptoms may seem common and simple, but they severely
impair a PH patient's ability to lead a normal life. Simple
activities like walking, dressing oneself, and cleaning
can become difficult to perform. Thus, a normal, healthy-looking
individual might be incapable of some basic functions
due to PH.
- Although there are over 100,000 people known to suffer
from PH, there may be thousands of others whose symptoms
have yet to be diagnosed. Many people may have PH without
knowing it or are misdiagnosed with illnesses such as
asthma or bronchitis, delaying proper treatment.
- Until 1990, there were no accepted treatments for PH,
but today patients have several options to discuss with
their doctors, although there is still no known cure.
- The treatment that has been in use the longest is not
only very expensive, but it is also highly invasive, requiring
the use of a pump that continuously administers medicine
directly into the heart by means of an indwelling catheter,
making it difficult for most PH patients to:
- Hold down regular jobs and maintain a stable financial
situation;
- Travel because of the difficulty with wheelchairs,
oxygen supplies, and security; or
- Control nausea and vomiting due to side effects.
- The goals of treatment for patients with PH, which
includes medications, oxygen, and transplantation, are
to:
- Treat the underlying cause;
- Reduce symptoms and improve quality of life;
- Slow the development of blood clots; and
- Increase the blood and oxygen supply to the heart,
reducing its workload.
- Recent data indicate that the length of survival is
continuing to improve, with some patients able to manage
the disease 15 to 20 years or longer. With increased funding
and more research, there can be a better life expectancy
for those living with PH.
- Much new research is underway, including basic and
genetic studies, unraveling the molecular mysteries of
the disease process, and the development of new medical
treatments. It is not difficult to believe that a cure
for PH can be found.
More online resources:
What is PH?
FAQs
Consensus
Statements
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- The Pulmonary Hypertension Association (PHA) is a nonprofit
membership organization that provides a community of hope
through mutual support, medical and public education,
and research.
- Beginning
in 1990, three patients asked the National Organization
for Rare Disorders (NORD) to help them locate other patients
with PH. From its humble beginnings around a "kitchen
table," PHA has grown to incorporate over 6,000 members.
- In May of 1990, PHA's first newsletter, Pathlight,
was created to serve the PH Community with timely and
relevant news. PHA currently produces two unique newsletters
mailed to all PHA members, as well as an electronic newsletter,
informing them about organizational activities, medical
developments, and other news affecting the PH community.
- PHA offers online tools at www.phassociation.org to
connect people through messages
boards and provide information and education.
- As treatments grow and medical interest in PH expands,
PHA has created PH Doctor
and PH Resource Network,
professional membership sections for physicians, researchers,
and other medical professionals, to sharpen its services
to the medical community, as well as to provide information
and advance educational opportunities in the PH field.
- PHA believes no one should face this disease alone.
A few years ago, if a patient wanted to meet other patients,
they had to travel to one of only eight support groups
in the country. PHA's growing support
group network is now comprised of over 100 support
groups, which build knowledge, camaraderie, and understanding.
- PHA maintains a helpline
with trained and knowledgeable volunteers that take calls
not only from newly diagnosed patients, but from those
in all stages of the illness, not to mention medical professionals
looking for more information on PH. Most helpline volunteers
are long-term PH survivors; all have lived with the disease
for at least three years.
- PH is not a selective disease: it affects people of
all races and cultures. In PHA's effort to spread the
word about PH, we are reaching beyond the borders of North
America. PHA has allied organizations
on every inhabited continent and is promoting PH awareness
on a global scale.
- November's PH
Awareness Month is a special time for the PH community.
It is an opportunity for patients, family, caregivers,
and medical professionals to focus attention on PH by
building awareness and enhancing education within their
local communities.
- PHA has helped to fund PH
research directly by raising money and establishing
three separate research programs for advancing PH research.
- PHA has been successful in advocating for PH research.
New hope springs from the identification of a "PH gene,"
which will aid future researchers in developing potential
treatments.
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